Shari Ungerleider and Myra Sack have one thing in common: They both lost a child to Tay-Sachs disease. For Ungerleider, 25 years have passed since she lost her son, Evan, while Sack lost her daughter, Havi, in 2021. It is hard to believe that, after all these years, babies are still born with Tay-Sachs and other devastating genetic diseases. The challenge is ensuring that future families don’t have to suffer. The solution is simple: accurate, comprehensive genetic screening and personalized genetic counseling for prospective parents.
Both women are vocal advocates of genetic screening and ensuring proper testing. To accomplish their goals, they have teamed up with JScreen, a national nonprofit public health initiative dedicated to preventing Jewish and other genetic diseases and educating communities about the importance of preconception genetic testing. This September to mark Tay-Sachs Awareness Month and Rosh Hashanah, JScreen will raise awareness about genetic screening so that every family can plan for a happy new year and a healthy future.
Sack recently published Fifty-Seven Fridays: Losing Our Daughter, Finding Our Way, a memoir of Havi’s short life and her parents’ poignant and tragic journey to help their daughter live and die. In revealing the beauty and fullness that can be discovered by learning to coexist with grief, Sack offers the reader nothing short of “an act of grace.”
In the years since Havi’s death, Sack and her husband, Dr. Matt Goldstein, have found purpose in their pain. She is now certified in compassionate bereavement care and serves on the board of the Courageous Parents Network. Sack also founded E-motion, a nonprofit organization she designed that blends bereavement science, spirituality and sport to help those who’ve lost a loved one find a new way of living with grief and loss. Goldstein is now the CEO of JScreen, an organization focused on high-quality, preventative genetic care and testing.
“Losing Havi changed everything for our family,” Sack says. “It’s impossible to walk through the world unchanged after losing a child. And so, as part of our transformation, we’re devoted to serving the world with grace, compassion and courage—the essence of Havi. When we can play any part in supporting other families, it’s a tragic gift that allows us to continue to parent Havi. I believe deeply in the power of community to buffer suffering and keep us whole. JScreen is a community with compassionate leadership, cutting-edge science, and most importantly, the power to save lives. It’s a community that every couple considering having children should lean on.”
Ungerleider says, “Not a day goes by that I don’t think of Evan and miss him, and I often wonder what our family would be like if he was still alive. I wanted to find a way to honor Evan and keep his memory alive. I decided to turn our tragedy into something positive so that other families would be spared the suffering we experienced by raising awareness about the importance of genetic testing.
“The purpose of a carrier screening test coupled with genetic counseling is to identify carrier couples, preferably before pregnancy, and help them understand the impact the disease would have on an affected child, and the reproductive options available to help them plan for the health of their future children,” she says.
JScreen makes genetic testing simple, accessible, and affordable by offering easy-to-use at-home saliva test kits. The JScreen Reproductive Carrier Screen gives prospective parents a deep understanding of their risk of having a child with a genetic disease. Designed for individuals ages 18-45, it tests for over 200 genetic diseases, including Tay-Sachs and other diseases commonly found in the Jewish population, as well as diseases common in other groups. If a carrier couple is identified, JScreen provides them with telehealth genetic counseling to discuss their results and options available for family planning.
What is Tay-Sachs?
Tay-Sachs disease is a rare, inherited genetic disease mainly affecting infants and young children. There is also a late-onset form of the disease. Tay-Sachs is caused by the absence of the enzyme HexA, which causes excessive accumulation of specific lipids in the brain and nerve cells, resulting in progressive neurological damage. Babies born with Tay-Sachs disease usually develop normally for the first few months, but as the disease progresses, they begin to regress. The children become blind and deaf, suffer from seizures, and have respiratory issues. Children with Tay-Sachs often die before the age of 5.
There is no cure for Tay-Sachs disease, but genetic testing and counseling allow people to determine if they have an increased risk of having a child with the disease. One in 30 Ashkenazi Jews, those of Eastern European descent, are carriers of Tay-Sachs, and 1 in 300 people in the general population are carriers. When both parents are carriers, there is a 25% chance with each pregnancy that the child will be affected by the disease. For the small percentage of couples who are at risk, there are many options, like in-vitro fertilization with preimplantation genetic testing, to help them have healthy children.
The U.S. Senate voted unanimously in 2008 to designate September National Tay-Sachs Awareness Month to bring increased attention to this deadly disease.
“A simple, at-home saliva test can really help families avoid heartbreak, says Karen Arnovitz Grinzaid, executive director of JScreen. “JScreen is there every step of the way to provide information about Tay-Sachs and other diseases, and to help prospective parents make decisions about the future of their families.”
Visit JScreen.org for more information or to get tested.
